Any positive stories about Benzo tapering?

Posted by sears @sears, Nov 9, 2019

Would love to hear some positive stories from people whom have tapered off benzos. Positive only please. Give me some hope. No horror stories! I need some encouragement!

@grandmaj5

Hi again @helenfrances In referral to searching for help concerning the benzo tapering problem. My husband and I are having a friend over the day after Thanksgiving (2nd Thanksgiving). He graduated from college with a Political Degree. He knows many Politicians and is very interested in talking with them and asking questions. He knows them by first name. I went with him to a meeting held by a politician and we brought up the "Workplace Bully Law". Even though, I didn't get far, I did get the word out. With that law, each state has to pass this bill separately. I would think the benzo tapering would be "extremely" important. I also have the email of the President of Aurora Health Group. I am going to write an email to him and very nicely explain everything. I am also going to suggest the Ashton Manual. Since he is charge of all Auroras in Wisconsin, it could help, depending how he takes it. There is also another Health Organization in Wisconsin that is actually owned by Nuns. I could find out who to email for this too. I know this is only Wisconsin. I can ask my "Political" friend if he knows what to do to help this problem, go further or higher up. He also attends many political meetings and events. It could help if someone is close to or related to a lawyer or someone in a position to help. Maybe all of us plus others could "Tweet" President Trump!!!

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This sounds like a great start. The government sure managed to get the opioid crisis under control. A little too much control for me though.

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@helenfrances

Did they give you a copy of “the national guidelines”?

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@helenfrances Hi, I somehow missed your question. They dd not give me "The National Guidelines". I was actually on the phone when I was told this. I told her that I would look it up. I tried to look up "National Guidelines" and I didn't see anything called that. There were other things that were somewhat similar, but different names. Today, I did find something, but can't remember the name. I am going to re-look that one up and share it.

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@helenfrances

Did they give you a copy of “the national guidelines”?

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@helenfrances I found this site https://www.benzoinfo.com. It is a site called Benzodiazepine Information Collation. There is a lot of information. Not sure if anyone else already posted this site. It looks interesting. I just skimmed over it, but I'm going to check it out.

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@helenfrances

Did they give you a copy of “the national guidelines”?

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Hi again @helenfrances. I looked at the site again and maybe that isn't the same one I saw before. It sounds like this one is more about stopping benzodiazepines. Maybe you can see what you think.

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@helenfrances

Did they give you a copy of “the national guidelines”?

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@helenfrances Hi, I have a feeling that the "Supervisor" I spoke with about the office just said "National Guidelines" I have been looking for a while trying to find something like the name. I don't think she even knows and wanted to sound smart. I should have asked her more about it, or gotten an email. I did look up FDA, but they seem more interested in opioids and opioids combined with other drugs. There are sights for tapering Benzos, which are very good, but I don't think they are Government or National. Something will come up. There is the Ashton Manual.

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@helenfrances

Has anyone sued a physician for needless suffering?

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Hi @helenfrances Even if you don't sue a Physician, you can report them. There are a few places you can do this. So far, I reported my ex-Physician to Medicare. The next one is your State Health Organization. If you look on the internet you can find others.

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@grandmaj5

I have been on 3 mg a day of clonazepam for about 8+ years. I had to find a new Psychiatrist. It took so long to find one. I can get into a NP Psychiatry in May 2020. When I called her office, she told the receptionist that she wouldn't see me until I got off clonazepam. She gave me a tapering dose for 3 weeks. I feel that this tapering is for everyone. I tried the tapering and kept getting worse. I got so bad that my heart was going fast. I was unable to do anything. I could only go to bed. I feel like a Zombie. This is happening right now, so last night I started up clonazepam again (taking 1.5 mg daily) to get through the holidays. I believe that my tapering was incorrect. I have not met or talked to the NP Psychiatric. I am not sure that she knows how many years I have been on clonazepam. I get anxiety attacks, have anxiety, have PTSD, depression, and ADHD. I believe I should call her back, but because she said she can't see me in May until I am off clonazepam, I am afraid she will not give me a proper tapering schedule and not see me. I only have so many pills left, so I have to be careful. My primary care physician just gave me a prescription of clonazepam of 50, 1 mg pills. At this time, I am unable to function. I feel I am living a nightmare. I feel extremely irritated. I feel bad for my husband. I am trying to fake my way through these feelings. I read that clonazepam is worse to taper off than opioids. I believe that a pharmacist would know more about tapering. I really do not know what to do. I am worried that the NP Psychiatry will not understand me (which she should). I don't know if I should contact her office or my Internist first. The reason I am saying this is because I have never met or spoke with the NP. I cannot believe that some medical practitioners cannot properly taper clonazepam. I have been studying this on the internet and I believe it should take more than 3 weeks for me to discontinue. I have been wondering if practitioners have been fully trained in tapering clonazepam differently for each individual. There is no way I can do this in 3 weeks. I have never felt so awful. I wish they could experience this feeling for just a minute. I am having company for Thanksgiving and then a birthday party. I started out preparing; now I cannot do anything. I am very scared that this will not work out. I am actually very lost. I am also afraid of what my Internist and NP Psychiatry will tell me. I was thinking of asking a Pharmacist first to get an idea. Does anyone have suggestions? Thank you.

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Whoa! How could the nurse practitioner not see you because on clonazepam and then give you a 3 week taper schedule and not see you frequently??????? Bad medicine

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@djanthony

I had been taking Ativan 1mg four times daily for acute distress. Stayed on it for four years. I finally told my Psychiatrist that I wanted to stop taking it. So he began reducing it by 1/4th of a milligram every two weeks. It seemed a bit difficult in the very beginning but i believe that was perhaps due to my fears from others telling me that getting off the Ativan would be a horrible ordeal. After the first three – four tapers, I realized that although I might be slightly anxious with each reduction for about three days, afterwards, it wasn't bad at all. Eventually I found the taper to be so easy that I asked if the Doctor would continue tapering but at a quicker speed, thus began a reduction every Monday – one step down per week. The only annoying symptom I experienced then was mild insomnia, which eventually resolved itself. Coming off benzos – slowly – isn't too bad at all. Felt more energetic, less sleepy and was able to think much more clearly once I was off Ativan. Years later, when diagnosed with Stage 4 breast cancer, I once again took Ativan but didn't fear withdrawing from it when I was ready because I knew I could do it quite easily! So, go slowly, take your time, and I doubt you'll find it difficult!! Remember not to allow your Doctor to reduce it on a more rapid taper, and you'll likely be just fine. Godspeed!

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Hi, @djanthony – that is interesting that you believe others' stories about how horrible an ordeal it would be to come off lorazepam (Ativan) increased your fears and made it more difficult to taper off successfully.

You mentioned that although you may have been slightly anxious with each reduction for about three days, afterwards, it wasn't bad at all. How did you get through the three-day period in which you had to deal with anxiety?

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I tapered down to 1/4 of five milligram tablet and decided to go down One more step to 1/8. When I stopped altogether my physical symptoms were nearly non existent. Seems there was a slight, very slight visual sensation when I was driving but it only lasted a day or two and was really insignificant. However I was not on a high dose. Only on rare occasions I would take 10 mg in one day. For a good while I was taking 7.5 grams a day. I think my biggest challenge was the fact that it had become a psychological crutch. That caused some stress when I quit until I started to do guided relaxation/meditation. That became my safe place and remains so for me.

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@engelee

Whoa! How could the nurse practitioner not see you because on clonazepam and then give you a 3 week taper schedule and not see you frequently??????? Bad medicine

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Hi, @engelee – have you had the experience of tapering off a benzodiazapine? If so, which one, and how did it go?

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@engelee

Whoa! How could the nurse practitioner not see you because on clonazepam and then give you a 3 week taper schedule and not see you frequently??????? Bad medicine

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Hi @engelee, sadly this is true. It started when I had to find new Psychiatrist (I had been looking before for a very long time). I was supposed to see a male Psychiatrist and a few weeks before my appointment, he retired. There was no one available in my network to see; I am at Aurora Health Care now. In our town, they only have NP/Psychiatrists. They are very booked up, because one of their NP/Psychiatrists quit, and the others had to take her appointments. This is a long boring story. Anyways, the NP/Psychiatric that I am going to see (not until May), had her nurse call me and said that the NP/Psychiatric would not see me unless I tapered off my Clonazepam. When she told me this, I said I had to think about that. I thought about it and realized that she was the only NP/psychiatric I could see. I called back and the nurse told me my tapering schedule for 3 weeks (which never worked and I almost had a nervous breakdown). I have been on Clonazepam for about 10 years. I did not realize the tapering would affect me so bad. Then, I called the NP/Psychiatrist's office and my Internist's office. No one got back to me the entire week. I called back to the NP/Psychiatry and and said my call was urgent. They said the NP/Psychiatry was too busy. They were going to put me through to another nurse. I said that I wanted to talk to the highest person at the clinic. They put me through to the General Manager. Her voice mail came on and I left a message (she never called back). I called the next day and asked again for the General Manager, they didn't tell me this, but they put me through to the Supervisor instead. I explained to her what happened and told her about the Ashton Manual ( believe I wrote about this part before). Before this, when I was feeling so terrible from the tapering, I told my husband that this was enough. I took a full pill and felt so much better. I wrote before how this Supervisor was very defensive and argued with me about the Ashton Manual. She said that they go by "National Guidelines". I told her that I would look that up. In the beginning, When I had heard that this NP/Psychiatry won't see any patients until they are tapered off benzos, I wondered about that too, and didn't think that could be correct. I hadn't seen or spoke to her personally and she knew nothing about me (except that I was taking Clonazepam). I looked on the internet to see if there was something about this; I couldn't find anything. Due to the inappropriate treatment I received from the Supervisor and thinking about the tapering, since joining this group, I am not going to see her, because I believe no one knows about tapering and they don't care. I tried to see a Psychiatrist at a hospital in our town, but Aurora said they don't refer there. The hospital said they don't refer to Aurora. I think this is a very stupid rule. Then, I checked again on the internet and found out that if you are on Medicare and have a supplement that is a PPO you can go anywhere. There are 2 Psychiatrists at the hospital that are taking new patients. I am going to call after Thanksgiving and cancel my appointment with the NP/Psychiatry, I am also going to cancel my new Internist (due to lack of communication or caring). My husband sees an Internist at Aurora, who is more concerned and keeps on top of things for my husband. He is not taking new patients, but said he would take me. So, after Thanksgiving things will change. I hope to get back on track. I am also going to ask if the Psychiatrist and the new Internist know about tapering. I will bring the Ashton manual with me and give each of them a copy. DOES ANYONE KNOW IF THE ASHTON MANUAL COMES IN A BOOK FORMAT? I also found this website that sounded the closest to the generic "National Guidelines" – PubMed.gov. Is is called the US National Library of Medicine/National Institute of Health. Thanks for the question. I am not sure if anyone else had to go through this time-wasting ordeal. I am from Wisconsin, so maybe they have different rules. If they don't, I will have to report this.

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@cim37343

I tapered down to 1/4 of five milligram tablet and decided to go down One more step to 1/8. When I stopped altogether my physical symptoms were nearly non existent. Seems there was a slight, very slight visual sensation when I was driving but it only lasted a day or two and was really insignificant. However I was not on a high dose. Only on rare occasions I would take 10 mg in one day. For a good while I was taking 7.5 grams a day. I think my biggest challenge was the fact that it had become a psychological crutch. That caused some stress when I quit until I started to do guided relaxation/meditation. That became my safe place and remains so for me.

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How long have you been meditating? I paid big bucks and hired a teacher that’s been teaching meditation for fourty years. I gave up because it made me anxious. I’ll try again. I wonder why it caused the anxiety? I told the teacher, she said she’d come back but is out of town until the first of the year.

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